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megsybeth

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About megsybeth

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  1. Kareng, Thanks for that info.! I hadn't realized they were labeled gluten free. I will stock up at Costco =). I have good luck with so much luck at Trader Joe's (waffles, bread, etc.) that I was worried it might be corn in general.

     

    Cyclinglady, that was always my thinking. That if you buy the exclusively Mexican brands they wouldn't have much reason to CC.

     

    Hopefully we don't have to cut this one. We love tortillas.


  2. I do a lot of shopping at Trader Joes and have found I have celiac like pain after eating their corn products. I don't think this has happened with Mission brand chips and I don't have issues at Chipotle or Mexican restaurants that don't share fryers. So I don't think I have an allergy to corn.

     

    But I'd like to try eating corn that I know is gluten free in production. Where can I find some? Can I get gluten-free corn tortillas and chips online somewhere? I don't seem to find them in WF, my regular grocery seems only to have Mission. I don't believe Mission claims to be gluten free, though I've had good luck with them.

     

    Also, if anyone does have dietary allergies, not to ask TMI, but is there diarrhea, gas, etc.? I don't get that with gluten, just intense pain, like an alien is trying to claw out. When I have corn from unreliable sources, I get a similar upper abdomen scratching feeling. Would allergies feel like this?

     

    Thanks,
    Megan


  3. According to my bloodwork, I seem to be taking quite a while to heal though I've been strictly gluten free and am aware and vigilent about cross contamination (eg I don't do fries in most restaurants, don't do most restaurants actually, don't do generic oats, etc.). I think I've had celiac since I had mono at six and was 35 when diagnosed. It's now two years later and two years of the diet. The malabsorption issues such as fatigue have dramatically improved and GI isn't bad, but never really was.

     

    I've relocated and new GI wants to do a repeat endoscopy because my TTG IGA is still elevated. She wants to rule out refractory celiac and has told me and I've been reading about the risks of untreated refractory celiac. But even though I'm elevated, I'm trending decidedly down.

     

    My first labs were through primary and I was positive across the panel but the range of TTG isn't accurate or useful since from Quest (and I don't remember it =)) 

    -second, a few months into diagnosis, was TTGI IGA of about 95 (university lab);

    -a year later about 45 (university lab)

    -and now about 23 at a new hospital lab where positive is above 15 (nurse thought it was same range as my university lab tests)

     

    My thinking is since my symptoms aren't troublesome and I just switched plans, I'd rather not use my deductible to pay for an endoscopy if it's not absolutely necessary. I would think she'll see blunting...but she hinted that she wouldn't jump to steroids, would just try to make my diet stricter. I'd rather just follow repeat labs and then, if not continuing down to negative, do an endo next Jan or later when I can pay my deductible for the year. 

     

    Any advice? I think I will also just stop restaurants or eating anywhere I don't trust 100% but my gut tells me (pardon the pun) that it just takes a while when active celiac is ignored for so long.


  4. The elevated tTg could very well be from another AI disease brewing.  I doubt that a little cc would cause it to be so high after 1 year....it should have come down more than that if you follow the gluten-free diet.

    I appreciate this and I am scared but trying to get in to see my doctor and do the follow-ups. The DGP  did come down.

     

    I can see how I might seem defensive about the cc aspect but probably you get that when your health is uncertain and you are in the process of testing, it isn't really helpful to be told to listen to your body. I mean I'll probably listen to my celiac specialist and her evidence. My body is telling me every ache and pain is a sign that I'm going to be sick and not be able to take care of my children. Becaus nothing is known yet.

     

    If I thought the problem was a pair of gloves at chipotle I probably wouldn't be here and wouldn't be so scared. I'm just hoping to get healthy and be able to take care of my little boys.


  5. I scored the coveted dessert spot on 5yo DS's Thanksgiving party at school. I want to make some fun gluten free Turkey topped cupcakes because it's his rare chance to eat the "real" treat. Dont' have time for experiments so I was wondering what the best, moistest yellow cake mix is. Was thinking of going with Barbara's since I use other products and like them. They're four so probably will care more about the candy and frosting on top but I'd love to avoid a sandpaper texture.

     

    Thanks!
    Megan


  6. I live in California so there are a lot of lifestyle gluten free people, which is mostly great but I get a lot of:

     

    -"So I hear you're going gluten free?".."Actually I done GONE. I don't really have a choice"

    -"You know if you have nice sour dough bread it cancels out the gluten"

    -"It's only the GMO wheat that you have to worry about"

    -"I'm trying to eat gluten free but last night I was bad and had rice" 

    -"Have you lost so much weight?" "Actually it kind of sucks because I gained, I was naturally skinny my whole life" (and then I watch the wheels turning...on a diet but gains weight,...cannot compute)


  7. A positive tTG IgA can also be caused by diabetes, crohn's, colitis, liver disease, thyroiditis, or an infection. I am sure there are other causes that I don't know about too. I'm glad they are looking into other causes too.

     

    ...this is actually what I'm most worried about. I know celiac is serious but if it's "just" from gluten exposure I wouldn't be worried. It's that combined with the low blood cells. My levels were low last time she did a cbc as well. I just realized I wrote elevated white blood cells (my son had elevated platelets and I got mixed up), it was low that flagged. 


  8. I've never cheated, I think I'm pretty knowledgeable about what I eat. I'm not super strict about possible CC outside the home, for example at chipotle I don't usually ask them to change gloves, because I've found my son (more sensitive) and I both are symptom free. But I limit how often I eat out and only have a certain list of places, I kind of go with my gut about if they really know what they're doing (pun intended =)).

     

    My first bloodwork was done at a quest but I had a strong positive on all markers. I've since done follow-ups at UCSD which has good labs and I see a celiac specialist there.

     

    My TTG IGA results have been:

     

    Sept., 2012, strong positive but don't have numbers, went gluten free immediately because I was breast feeding

     

    dard Range
    1/28/13 5/1/13 9/20/13   Endomysial Ab, IGA Titer
    <1:10
    1:20 H <1:10 <1:10   TTG IgA Ab
    0 - 19 Units
    94 H 49 H 45 H

     

    I also have consistently had elevated white blood cells. Have to see GI for follow-up, she thinks it might be another AI disease. Also mentioned maybe needing to go back in for another endoscopy. I'm worried about what else might be. Any btdt?

     

    -Megan


  9. It sounds tough for all of you. I totally agree that it's normal to be sooo picky at that age, but to actually refuse food all day is a bit more intense and suggests he cares about this a lot. There are feeding therapists and group programs. It could be a combination of things, where he associates some food with pain or has motor issues from the celiac. But they can be tough habits. I'd try the suggestions above but if you have insurance that covers it or the funds, I don't think it would hurt to consider feeding therapy.

     

    My DS has OT for motor issues and has needed help just eating "hard" foods. I think without his OT honestly telling me that if he spits out meat to have him pop it back in :wacko: , I would NEVER have done that, but you know it worked and he needed more than the avg. kid who just needs to be exposed.


  10. I'm about ten months post-dx and gluten free and lately I keep getting sooooo bloated. It looks and feels like I gained fifteen pounds but I barely eat. Right now I'm so bloated my back hurts. I'm going to eliminate dairy to see if it helps but I thought lactose intolerance was usually early in the recovery, not later. Levels in blood work being tested tomorrow but they've been going down.

     

    I know I should do a really restricted, mild diet and add in foods one at a time but honestly don't know if I have the time or discipline to do it right now becuse life is so crazy. Any advice for a way to get on top of this?


  11. Last year we used the Discount School Supply play dough at home and at DS's school. I don't belive we've had any reactions. But I noticed when I needed to reorder that they don't list gluten free on their website. So to be safe  I tried another officially gluten free brand. I'm not happy and am sending it back (Scented "wonder Dough", sticky, sticky, stains).

     

    Do you know if Discount School Supply changed anything or is it the same dough?

     

    Thanks,

    Megan


  12. Something keeps giving me stomach cramps and DS diarrhea. His babysitter swears it's the M&Ms because she thinks he has diarrhea every time he gets them. I give them every day as a reward for going #2 on the toilet. But I don't notice that he gets D directly after. Mars lists them as gluten free. In general I would say we're not extraordinarily sensitive to cc but I thought I'd check if M&Ms were a trigger for others.


  13. I think you could suggest to them that they label them "wheat free". For me, this is clearer that they are going for health-conscious people. Peet's Coffee carries a wheat free muffin and when you ask them about it, same thing, shared facility, bumping all around with gluten products. But there is a market that just wants to avoid wheat, so I get that it's not for me. I think the label "gluten free", should be reserved for products made by people who know what it is and why it's important.


  14. I feel like I'm really careful but lately a couple times a week I'm getting pain and brain fog and he's getting D and grumpiness. I know I need to go back to basics but a couple things that I thought might be causing issues, though it's hard to say when we get triggered:

    -Think Think Bars, I have one a day and try not to let ds have them but he always nags for bites

    -quinoa? possible?

    -Sukhi's sauce mixes (Indian). I think these are the likely culprit and will eliminate but they are dedicated gluten-free and vetted by Sprouts, which checks pretty well before putting their store gluten-free label on and much of the Indian diet is naturally gluten-free, so cc seems less likely...

     

    I don't think these are other food sensitivities because for me, it's an intestinal burn and fogginess that can only come from one thing. I also get plain old disgustingly sick from oats, watching out for those more vigilantly too.

     

    Any tips on above brands appreciated. Any other bars to try? I have a very hard time finding things I can eat in the morning. Even before diagnosis, I needed to have something that I could make myself eat first thing. I make my own lara bars for the boys but want something less sugary for me.


  15. Thank you for this. It's so hard because it impacts (no pun intended) where and for how long he can go to school. He hides the staining from his teachers even though he's in a preschool that's supportive. He's going to a new school in June for summer camp and then full time in Sept. I'm worried if we can't fix this he'll be asked to leave..


  16. I wouldn't retest if you mean putting her on gluten. Not at this age. So much of the brain is forming and do you want to deprive your daughter of a little bit of fat and nutrition for that brain? I have a nearly five-year-old with developmental delays, delayed growth that I believe are strongly linked to my celiac and his gluten issues. I just find the thought of forcing kids this age to eat gluten barbaric. I did it this fall up to his endoscopy (three, four weeks) and I kind of regret it. I just hope that tests improve. Let's hope for that and do what we need to do for our kids now. Keep looking for doctors. Try someone recently graduated from medical school maybe. Could be more informed.


  17. He's definitely being followed by a pediatric gi. I haven't done anything not recommended by them. I do think there's also a misunderstanding about what I'm giving him to drink. We drink seltzer which is pure water, sometimes add a little lemon. I also had some Martinelli's sparkling cider which had some juice in it. I think fructose can soften stools but obviously not that much or I wouldn't need miralax. Lately I'm adding prune juice to seltzer. It's not like I'm giving him a liter of pepsi ;) . I have a follow up next week and am recording my dosing and the staining/bms the next day so hopefully we'll have something to go off.


  18. One of my most recent symptoms before diagnosis was cankers sores. I've had them all my life. Other celiac symptoms went away over the years but these stuck. Since going gluten free I get them occasionally and mentioned to my celiac specialist and she says the symptoms can last a while. But they're getting a lot better and less comon.

     

    Today my son, who is 4 and gluten intollerant, showed me has first canker sore. And I have one. I've heard some people get them when glutened. Anyone else? I'm not sure what could be new, checked all our supplements. The only restaurant we've been to is Chipotle which has been good to us so far. I'm just wondering if I should eliminate some foods or if it's a coincidence we both have them.

     

    Thanks for any advice!
    Megan


  19. Thanks, Irish Heart. I do give him probiotics every day. I'm not able to adjust when he gets them (some do better a few hours after eating) because there is just too much on my plate. And I'm not really sure if I should adjust the dosage beyond what is prescribed. I guess sugary soda isn't accurate, it's not high fructose corn syrup, just these sparkling apple ciders with a little juice in them. Last night I just did prune juice because he hadn't gone all day.

     

    I do wonder how he can hold it. When we had to clean him out for his colonoscopy he did the "clean out" (MOM I think?) and didn't go, called doctor in the morning and she had me give him more, then a suppository in the hospital...didn't go. Of course he exploded in the room where they did the scope but the kid has some strange rectal powers when he's awake.


  20. My son has non (?) celiac gluten sensitivity. The main symptom before diagnosis was explosive, horrible, horrible diarrhea. Well this is not a crowd that probably needs me to explain =). But he also has this other extreme. His most recent doctor recommended a book "The Ins and Outs of Poop". Great book with gross name and even grosser pictures. The book makes the case that kids get desensitzed, and stretched out in the colon from having stool held routinely and need a long time to get back on track.

     

    The most popular way is Miralax but I just cannot find the right dose. For one thing, he'll sometimes not drink it all and I have to guess how much he got. If I tell him to drink it, well that's not happening. But when we get him in a groove (by giving really sugary soda to get the miralax down...) he'll get such loose stools that he doesn't make it to the toilet in the morning, not formed at all. If I reduce by one teaspoon, constipated, leaking, very bad behavior.

     

    I have found that suppositories work miracles but my son doesn't agree and I feel like that's something you shouldn't force. I ordered some pedialax chewables from Amazon. Yes, I'm trying to up fiber and fluids (I even sprinkle flax meal on all his starchy foods to hedge them). I know I can do better but I also want my little boy to go to school which is really hard when he is either having diarrhea or constipation.

     

    Any advice?


  21. Oh no, this is not a good idea. I can understand the appeal of testing young, for some procedures that does make sense. But do you know what makes a brain? Fat. Cholesterol, fat. Your child is doing some of the most important neurological growth right now. This is why nutrition and high calorie diets are so critical. You cannot consider depriving your child of nutrition so drmatically.

     

    My son didn't get the official diagnosis. I just lie.  I'm lucky enough not to need free lunch but I think even in my school district they would accomodate because they are decent. Teachers are also usually decent and if not, even if you have an official dx they'll probably do what they want. How could it really be important to have a celiac vs. gluten intolerant dx?


    Please find another doctor.


  22. Hi Everyone,

     

    I thought it might be nice to post how we're doing, especially those of us newlyl diagnosed. I haven't posted here much lately because DS and I are both well on our Gluten free way but this board was so great for me when I was first getting tested, diagnosed and dealing with symptoms that I wanted to report back. I think I've had celiac for about thirty years but it was never caught. It was only after my son started showing classic signs that I read about symptoms and realized my canker sores and infertility actually meant something. I tested positive on both blood panel and endoscopy. DS, 4, has had all the classic symptoms like small stature and finally this summer months of HORRIBLE diarrhea. But blood tests were all negative except DGP IGA and endoscopy (more than 8 samples from duodendum) was negative, reviewed by UCSD pathologist and GI and confirmed negative. Still gluten free and I tell people he has celiac's disease so they respect the diet more. Also, he has the same "low risk" DQ2 gene I have. Personally I think in ten years we'll have much better tests so we won't have to mess around with these gluten challenges and other nonsense. Clearly gluten's not for us, so the diagnosis doesn't matter as much.

     

    As for me, the first few months were hard in some ways. Lots of pain, lots of D, which I hadn't had before or hadn't noticed. But I was a lot happier and remain so, higher energy, fog lifted. I also had canker sores for most of the first few months but now they seem to be gone. I had another blood test a couple weeks ago and don't recall levels but TTG IGA still high but Endo thinks that's ok . I'm starting to feel what I think is normal, but I'm not sure I would know normal! My big issue, I'm gaining weight. I was never too thin but I could always eat whatever I wanted. I'm still struggling not to do that anymore. Even though the hunger is gone that I had when malnourished, I just want to eat a box of cookies, damnit! Also my "clumsiness", which I guess was gluten brain dammage, is much improved. The other day I ran into a door and my husband asked me if I'd been glutened, he was so surprised to see me clumsy again.

     

    My son is doing really well, no more D. Improved appetite. Growing like crazy. I'm not sure about total growth but at one point he grew 1/2 an inch in ten days. Therapists (occupational, he has motor delays), speech and teachers all say his attention is improved and he's talking more at school. He's definitely getting stronger and more muscular. He's also doing so well with the diet. This is a very immature, impulsive child but he's able to talk about what foods have gluten and about how they give him diarrhea. Of course he also makes recommendations to others which are pretty funny. Jane's sick? Oh, maybe she should go to her doctor so she can tell her which foods will make her feel better.

     

    I know I'm very lucky, and so many of us here are suffering much worse symptoms and slower recoveries, but for our family, we are so thankful for the gluten free diet. I guess the way I see it is that I'm not unlucky to have "gotten" celiac disease. I'm so lucky to have been given a treatment. I have to cook a little more often than I'd like to. Miss some of those Trader Joes quicky dinners and takeout, but I know something about my body that is so important and I can help my little boy. So I'm very thankful.

     

    Best of luck on your recoveries.

    -Megan


  23. I have a very small jaw, over-crowding and, at 4, my DS's dentist said "Oh yeah, he's going to need braces" because of the same issues.. It's really funny these things that come up. I've only been diagnosed with celiac for three months, which seems crazy, but it's been the first time in my life where my experience has started to seem real. Since childhood it's always been about everything being in my head. I'm a little sad about my son because I worry about what my gluten intake might have done to him. People tell me it's not my fault. Of course not, but it's natural to feel a little sad about something so simple that could have been done to improve both our lives.